Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

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Nothing

I would never have believed just how difficult it is to do nothing. I’m not talking about sitting in one place staring at the TV, no, that’s easy, that’s what we have spent most of our lives being trained by the entertainment moguls to do, and boy have they done a good job on that one. I know that kind of nothing is something I have always struggled with, but this type of nothing, this type of nothing is so much harder and so totally different. This type of nothing is far more intense and far far more difficult to even get your head around, believe me.

Many might think that the physicality of doing “nothing” would be the hardest part, that inability to do even the simplest things for ourselves, but the physical is easy. You adapt, you slowly accept that your home will never look the way it did, that housework is nothing but a memory, and dinners to be proud of, well almost fictional. Even as we lose our dexterity, the ability to dress, to manage those buttons and zippers, or to even to wash ourselves, there is a calm acceptance that appears from nowhere and takes over. Where it comes from, how it even forms is beyond me, it feels almost instinctive something that nature has taken care of and is set deep inside. If only the same could be said for what happens in our minds.

There are times when you are living with a chronic condition where your health takes over and mentally there is nothing you can do. Saying that, makes it sound like it’s a fait accompli, despite the fact it’s out with our control it’s not what we want. Even when our brains are as numb as our outer side looks, part of us still yearns to be anything, other than what we have become. We’re that lump, that just sits or lies there apparently doing nothing and too tired to fight for the life we once had. Yes, we have brief spells of appearing as though we are ourselves, but the rest of the time, we’re lost. The flow of life has turned from a torrent of events, to being becalmed and stranded miles from not just land, but far more painfully, from the nearest person we know. Life has become a stagnant silence, broken only by the voice that screams inside us, the voice that sounds so clear, so logical to ourselves. We listen to it all day long, filling in the narrative of our memories and the actions we have to take. We hear ourselves just as we have always heard us, that at least hasn’t changed, that is until we try to let ourselves out. Reality, is always the same, a mess of stuttered confused sounds, sounds that are alien in every way possible.

Conversation is a case of guessing what we really heard, compared to the fragments that our brains have actually recognised as such. Concentration is an art that now escapes us, but it doesn’t stop us from trying, often with results that amuse those around us. We don’t always get those fragments right, nor the context in which they were said. Apologies flow thickly amidst what we hope will be passable as an answer before we are lost again. At times we get away with it, at others, we can hear and see the concern that our voice brings when heard. All the time we are yearning to just be able to connect, to feel part of what is happening around us, but we can’t, because we’re constantly been drawn back into doing nothing, and that’s where it gets truly hard. Having yearned all day to just have company, now that we have it, we’re still alone, as no one can truly join our isolation. Those few short hours of togetherness passes us by, aware of their presence, there but not there and before we know it, it’s once more the hour when sleep takes over and “nothing” doesn’t matter, as “nothing” is all there is.

When we’re alone, we kid ourselves that we’re fine, but all we are doing is drifting through a labyrinth of nothing, a labyrinth that we tell ourselves is normality, but we know isn’t. Somehow that makes it sound as though it should be easy to live with, as after all, how hard can “nothing” be, but the truth is, it’s incredibly hard because we know it’s all wrong. Just as wrong as the tiredness that drags us back over and over again to our beds, asleep is the only place where normality isn’t questionable. There is a joy in those endless hours of sleep, in being unaware of the fact that we are once more doing “nothing”, as it’s the only time that our conscious self, is switched off. Trust me, I have tried many a time to switch it off when awake, but I can’t. In fact, if we could, then life for us would be easy, as then, we wouldn’t be aware of all those things we’re not doing, like simply thinking in a logical fashion.

“Nothing” is painful, only because we are aware of it’s existence. There is no way of removing it, no way of coming to terms with it, it’s just there, always there and always reminding us that “nothing” is all we will ever do.

23 thoughts on “Nothing”

Even when we are asleep there is not nothing. Our brains are filing the days problems and worries, but that is good. We often feel, no wish, our brains were doing nothing but an active brain is a healing brain.

Our brains can be remarkably resilient and will fight off that impending dementia.

I spent a year (only)barely leaving the house while I waited for disc-bulge surgery. Back in 2011. I left the house for my chiropractor appointment and grocery shopping. Just 2-3 times a week. And I had to dose up with extra Oxy to do it. My whole world revolved around my bed, the toilet and struggleing to move about the house without my walking stick. These days I sprinkle my ‘Down-Time’with things that either stimulate or switch off my brain. Drawing……mindfulness colouring in. Word finders & yes, Lots of TV. Can you start with a little goals list? Even if it includes things you would do automatically. This way you have a way to feel you are achieving something even if you don’t realise it’s worth you are still surviving. Not the normal you recall but surviving. Good luck.

I have worked of a routine or as you call it a list of goals, every day for the past 7 years. I achieve all of it daily but it is now so automatic, that it too feels somehow to be nothing. My brain won’t take any more than I already do, I’ve tried and I just land it up in an uncontrollable spin, feeling scared and even more lost.

Life has developed this odd flow to it, which is in some ways the reason I feel this way. I have points, wake up, the nurses, my carer, Adam coming home, then bed again. In between my time flows filled with all the things that I do, but to my brain, it’s all become one huge nothing. Don’t get me wrong, I’m not dissatisfied with life, it’s my mind that has taken me to this position of almost switched off, but still there, and there seems to be nothing I can do about it. I am becoming oddly content with life, which is my greatest fear. How long before I become content doing even less, achieving even less? I remember who I was, and that part of me doesn’t like this at all. I hope that all makes sense as it’s an odd place to be.

As an active blogger I “follow” a number of writers but since I came across yours it is really the only one that I look forward to getting in my email and that I read every word. Besides your elegant writing, your words create a tremendous amount of insight and empathy. My older sister died from complications related to MS, so I know what the physical part looks like, but you have made me see so much more of the inner life and how hard you work at sustaining that flame. Every time you write, it educates me, and always touches my heart.

Thank you. I’m glad I have managed to help you understand how you sister felt living through what is a life changed in ways, that are hard to imagine. MS is a condition that effects us all in different ways, but I know from those who leave comments, that my words are true to our universal reality. I am sure that your sister would be pleased to know that even now, you are still trying to understand just how her life was.

Hello Pam,as always I hear you and feel so similar to you our thoughts must surely be in tandem.I derive much comfort from knowing that I am not alone.I sit here thinking,saying to myself don’t be soft then you come along and all that I have been thinking you say.It helps me to realise that these random feelings are not just me being soft.!!I send you and Adam my very best wishes for Peace,Love and Joy.,and hope that 2017 brings us an even keel to row.Sending love and gentle hugs.Nx

Thank you Nancy. I too even to the second I press that publish button think, don’t do it, they will think you are mad. Then wonderful people like you, tell me I’m not alone. I too send you my wishes for Peace,Love and Joy.,and hope that 2017 is a better year.

Thank you for helping me to understand about the “nothing”
I watched my father gradually withdraw from group conversations over the years of his illness, and you explain why so well.
Your blog really ought to be recommended by health professionals to friends and family of those suffering from chronic illness.

I understand all this but I can t explain it – nothing.
My life has changed dramatically to an unimaginable position now and I think I m expected, by some, to start doing something because of this but that something is as you have been able to surpass any writing is I ll be doing nothing.
An exceptional piece all professionals, friends and family should read.
Thanking you immensely for putting this into words.

I never believed it possible to do nothing. Even if you are simply sitting up and staring into space. .you are still doing something. Just the act of remaining in the sitting position is something whether you are aware of it or not. Thinking, Feeling and Dreaming are also things you are doing even if only from inside your brain.

Happy New Year, Pam. I’ve been looking for your new post for weeks, and I was glad to see you responding to messages, so I knew you were okay, but now I’m starting to really worry. I hope you’re doing good.